Speaker: Mark Higginson, MS, CCC-SLP
July 21, 2021
4:30 - 6:00PM (AZ time)
QOL is one of hundreds of medical acronyms, but at the end of the day, it’s the most important one. Quality of Life should be the driving purpose behind every medical intervention; yet many people with Parkinson’s find that appointments and prescribed exercises have become their life. How do you manage Parkinson’s rather than letting it manage you?
Come learn some tricks from a speech-language pathologist who specializes in a practical approach to Parkinson’s management.
There’ll be plenty of Question & Answer time! Ask anything. A list of potential topics will be provided to help get it started.
Wellness Series Summary – Quality of Life and Parkinson’s disease
Speaker: Mark Higginson, MS, CCC-SLP
Tips for Improved Quality of Life
- Put the important things in your life first. If you put the important things first, you can still find time for the other things. Object lesson: Balancing the pursuit of good health with things that make you happy. The sand represents medical appointments, exercise, etc. The jar represents a week of your life. The rocks represent the things you enjoy. If you put the sand in the jar first, you can’t fit the rocks in also. If you put the rocks in first, you can still fit all the sand in the jar. In life, if you put first things first, you will find a way to make everything else work. You can even find time to have a drink with a friend as shown by adding water to the jar.
- Find activities you enjoy. If Parkinson’s has taken away your ability to do something you enjoy, ask if there are ways to modify that activity so you can still enjoy it. If not, can you find another activity that you enjoy? Tell your therapist what you want to work on so they can set goals to help you do the things you enjoy.
- Don’t feel guilty. If you’re feeling overwhelmed with your exercises, ask your therapist for help. Ask them the purpose of each exercise to better understand why you are doing the exercise. Don’t feel guilty if you don’t do your exercises or if you don’t do them as much as prescribed. The purpose of these prescribed exercises isn’t to make you feel guilty, it is to help you with function.
- Learn how to use the exercises in the moment. Are you having a hard time finding time to do your exercises at home? Exercise at convenient times such as sitting in your car or waiting in the doctor’s office. Do your exercises prior to other activities such as doing voice exercises before a family gathering or PWR! Moves before you golf as a priming technique to help you get more out of the activity.
- Prioritize your symptoms. Write a list of your symptoms and mark the ones that bother you the most. Speak with your doctor or therapist about those symptoms so they know what is most important to you and can provide you with possible interventions. Ask other people with Parkinson’s what they have tried to reduce that symptom. There isn’t a cure for Parkinson’s, but we do have medication, exercise, and other interventions to decrease symptoms and improve quality of life.
- Strengthen new and existing relationships. Think about someone you haven’t called in a while and reach out to them. Don’t stress about having a perfectly clean home to have friends or family over. Find ways to enjoy the company of others whether it is in a group or one on one. Relationships add richness to our life.
Speech Therapy Tips
- What does a speech therapist do? Speech therapists work with individuals to improve anything involved with communication such as things that may affect the brain, lungs, or mouth. This means speech therapists can improve your breathing, your cognition, and your ability to swallow and speak.
- How do you keep from swallowing down the wrong tube? A big fear of those diagnosed with Parkinson’s is aspiration pneumonia. Aspiration pneumonia is avoidable. Keep your mouth clean and attend your dentist appointments. The danger isn’t food or water getting into your lungs, the danger is a germ getting into your lungs and causing a bacterial infection. Watch out for symptoms such as fever, cough, or difficulty breathing. Breathing exercises will be prescribed so that the lungs can clear out anything in the lungs. Slow down how quickly you eat or drink and keep your head level, so gravity doesn’t force you to swallow before you are ready. Using a straw to drink beverages can be helpful so you avoid tipping your head back. Reflect on what is causing you to choke or cough. Do you need to slow down? Do you need to soften hard and crunchy food? To maintain your ability to swallow, perform at least one set of a dry swallow ten times a day to keep your swallow muscles strong. A dry swallow means swallowing without food or liquid in your mouth. Swallowing is a reflex when you are eating and drinking but performing a dry swallow requires more muscle activation and therefore improves the strength. If you are having difficulty swallowing, you can massage your throat to improve muscle function. If you are coughing, take a deep breath through your nose and then do one strong cough. Parkinson’s causes us to move less so our coughs often aren’t strong enough to clear the obstruction.
- How do I decrease sleep disturbances? Sleeping is like a car. If your car has a dead battery, broken alternator, and ineffective starter, you need to repair all three things to get your car working properly again. Just like you have to solve all the reasons you aren’t sleeping well to get good sleep. It could be sleep apnea, a chemistry problem, or sleep behaviors. You may need to adjust your medication to get better sleep. Decreasing phone usage before bedtime, getting enough exercise, and not taking naps may be behavioral changes you can make. Bring this up with your movement disorder specialist to see what they may recommend or consider seeing a sleep specialist.
- How do you keep from thinking about how disastrous the future maybe? You should think about the future, but you want to focus on the rose instead of the thorns. If you approach something with a bad attitude, it is likely to have a bad outcome. How we think about things, can affect how we feel. Cognitive-behavioral therapy may be helpful if you are having persistent worrisome thoughts. Cognitive-behavioral therapy is the process of identifying what thought makes you worry, picking out what might not be fully true about that though, and then coming up with a healthy alternative. It teaches you to look at the same thought or situation from a different perspective.
- How can I improve my handwriting? Micrography is small handwriting with some incomplete letters that can be difficult to read. Stretching and exaggerated hand movements can recalibrate the brain to improve hand function. Use hand devices with resistance to strengthen your hand muscles. Find a device that improves grip strength and extension. Fold a piece of paper in half and write all the way across from top to bottom. Write huge and make sure all the letters are complete. Use this as a priming exercise before you need to write a letter or grocery list.
- What if I am having difficulty with word-finding? Don’t let the deficit stop you from conversing with friends and family because that can make the problem worse. Play word-finding games such as Scattergories. When you are stuck finding a word, try to find another word and move on or make a definition of that word. Describe the word with a category and unique feature. Example: I’m thinking of an animal that is slow and has a hard shell – a tortoise. Practice this strategy by defining objects in the room.
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